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Volunteer Advocate
cf insights cf insights

The McDougall Family: Time is Precious

My name is Twyla McDougall. I live in Regina, Saskatchewan. My husband Christopher and I are blessed to have three daughters: Ella, Soleil, and Allegra. I was a dental hygienist, but after my oldest daughter Ella was born, I chose to stay home with my girls. Now, I’m a homeschooling mom. I’m so thankful I can do this. I get to spend more time with my girls. Time is precious.

Ella was diagnosed with CF when she was 23 days old via the newborn screening process. Since then, the battle is on. From day one, Ella’s biggest CF challenge has been GI issues, specifically, maintaining a healthy weight. Malabsorption of food is a big challenge. Regularly, Ella was in the failure to thrive weight range, and a simple cold could have had her fighting for her life. At age three, Ella got a g-tube.  It’s a feeding tube surgically placed in her tummy, through which she gets 1100 calories in formula, daily. She eats regular meals, but needs the g-tube feedings to maintain a healthy weight. Ella has been hospitalized six times. Four of those times were 2-3 week stays for IV antibiotics. Ella spends 2-4 hours per day doing her medical therapies. Nebulized meds, physiotherapies, saline rinses, g-tube feedings, counting out meds, and taking them many times a day – well, it all adds up. Some days, it’s overwhelming and a struggle to do what we must, but we push through. CF doesn’t take a day off, and neither do we.  We’re thankful for the people supporting our family.

We share Ella’s story so people see what Ella faces, and our concerns for her future. Daily, I ask myself: Have I done enough? Have I missed anything? Why does her cough sound different? Will people understand if we cancel if Ella is sick? Will Ella benefit from the drug Orkambi? Will she get to try it?  Will something better be discovered soon? Ella is starting to understand how serious CF is. Her questions like, “Which is worse, CF or cancer?” are so hard to answer.

I hope that a cure or control is found for all 1700 CF mutations. Fast!  Ella dreams to be a missionary at an orphanage in Africa.  Right now, I cringe at the thought, because of the CF factor in her life. I dream one day the words “progressive” and “terminal” won’t be used to describe CF. I dream Ella will be a Grandma.

Why should people donate? CF Canada is trying to get Ella access to the drug Orkambi, that may extend Ella’s life for years, maybe decades. Let’s face it, without the donations, it’s tough to make it happen. It all helps.

 

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